Winter 2019 Updates

I realized its been a long time since I wrote a "Jameson update" blog, so I decided what better to do on a Friday afternoon. :)

So far, 2019 has treated us pretty well. Making the decision not to put little man in school this year was bittersweet but obviously the right choice. The amount of illnesses this winter compared to last winter is not even comparable. He has been so much healthier! We just dealt with our first winter hospital stay and pneumonia, but little man was able to get his lung function back very quickly.

The biggest issue we've been dealing with the last 6 months has been urinary tract infections and antibiotics. With the vesicostomy, there is a constant stream of bacteria that is being introduced into his bladder all the time. Since he doesn't have the correct nerve function to tell him when his bladder needs to be emptied, he tends to only empty small amounts at a time, which in turn makes the bacteria sit in the bladder longer and create infections. We are trying to help him with that now by catheterizing the vesicostomy 3x a day, but UTIs can still happen. Each time he gets a bad UTI, he has to go on strong antibiotics to prevent his kidneys and bloodstream from becoming septic. And that in turn creates problems like C Diff infections in the gut. When you go on antibiotic after antibiotic, the medicine strips out all the good bacteria sitting in your gut helping you with your gastrointestinal movements. This causes bacteria like C Diff to run rampant in your GI system and cause a lot of pain, discomfort, diarrhea, etc. The only solution to a bad C Diff infection, is more antibiotics!! (Plus lots of probiotics - when we can do them)

We will be returning to Mayo to see our doctors a week from Tuesday, so hopefully we will get some new plans in motion to help figure out what to do about this constant cycle of UTI-antibiotics-C Diff-more antibiotics. Sometimes it can be hard to know what the right things to do are, but I trust his medical team will always do the right things for little man and strive to give him the best quality of life possible.

Thanks for checking in as always! :)